Im tired of this, I had a seizure last night and a small one this morning

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Im concerned about the psychgenic seizures from my ptsd.... that only give me reasons to think there s a def poss of having both.... :( but the pheno was extremely low (almost non-existant) when i was brought to the hospital...and now my partner says that bc my thrashing is only with some extremities, she believes that is it mostly psycho seizures.... the pheno makes me tired because the dr's tripled the pheno as well as the tegretol...(after i took myself off them) the 9 pupil was prior me getting back to a good level........what to say to her???????????????????????????????????????????????
 
wow... my experience was having a tonic clonic and the asshol neuro told my parnter that is was purely psychological.... total bull shit! i vomited all over myself ... how is that poss with a psychogenic???
 
Jill,
So glad you tried calling your doctor. Make it your priority for tomorrow to call back.
Having seizures and trying to describe it to some else is hard enough and then to have some one discount what you have just said is very frustrating. I am very lucky that I have a great neuro, but I have had a lot of medical
problems all my life and had my share of not so good doctor stories.
Work on a list of concerns that you want addressed with your doctor and take it with you. Don't be embarassed, a lot of us do it since seizures/meds can have an affect on our brains. Don't leave the dr's office until you have some kind of answer, direction on what to do for everything on your list. I have trained my doc, now after he gets done with all the standard check up things, he asks me for the list!
Jenn
 
Jill --
At least two of things you mention make me think your seizures are NOT psychogenic.
1. Post-seizure fatigue/depression, and 2. dilated pupils. -- Both of those are usually symptoms of epileptic seizures, not psychogenic ones. When you talk to your new neuro, describe as much as possible about how you felt before, during, and after the seizures. The more information, the more likely that the neuro can come up with a good diagnosis and treatment plan.
 
Jill said:
it also makes me feel non-validated as to the sufferung that we go through with seizures.....I fight the sleep after the seizures and end up feeling like crap the whole next day so I dont look "weak" has anyone been here before?
Click to expand...

why do you fight falling back to sleep? and what do you mean by weak?
 
Jill, you might find the following discussion threads of interest:

PNES
 
Hello there.

I'm finally here. Sorry it took me so long. It's been a long day, but I do want to say hello, and welcome to CWE.

Eric and Nakamova are both right, I do have a detailed list that you will find quite useful for an E journal. And, I am sure that you will find it quite useful in many ways. It will help you and your doctors figure out what your triggers are, and if there any allergies possibly going on that can be the source of your problems.

Eric does bring up a good point about including the movement of your bowels. Please do so. I don't think I have it listed in here. I do need to change the list so that it is included, because it is a valid point. For some people, those movements, (or lack thereof) will trigger a seizure.

You don't need anything fancy for the journal. A notebook will work just fine.

Here it is. And if you have any questions, feel free to ask. I'm stepping out again for a bit, but will be back on later tonight.

***********************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List :)


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

Feel free to ask all the questions you want, and to check out all the nooks and crannies here at CWE. The Library and the Kitchen are full of information. The Padded Room is great for venting when you really need to. And RobinN and Zoe are the nutritional gurus around here......

Take care, and good luck!

Meetz
:rock:
 
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